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| From left to right: Friend Joe, husband Terry and yours truly (approx. 45 lbs. heavier) the evening of November 11, 2012 at La Patrona Polo Club in San Francisco, Nayarit, Mexico. |
Had anyone told me at some point in my life I would be chronically ill for three years, I would never have believed it. I've been on this long, seemingly endless and often arduous health journey like a bad dream I can't wake up from. Even so, three years? Really?
My then fiancé Terry (we're married now) and I were enjoying a long weekend at my holiday home in Mexico with my long time high school friend Treasure and her then fiancé Joe (they're married now with kid). The second to last night of our stay, we enjoyed a cocktail on the beach for happy hour and watched our closest star seemingly melt into a calm, shimmery Pacific Ocean. This is truly one of my most favorite pass times, or at least it used to be.
We took a cab into Sayulita that night and had a beautiful dinner at a fancy restaurant right on the beach. Afterward we strolled around town, ducking in and out of boutiques, marveling at local artisan crafts and taking in the festive atmosphere that comes from a vibrant weekend night in this somewhat quaint Mexican surfer town and tourist trap.
Before long we were back in my cozy little village of San Pancho, having a nightcap or two at Panchitos. Formerly known as The Drunken Monkey, Panchitos is the favorite local, open-air-palapa-style watering hole in the village. Best of all that night, a regulation shuffleboard table! Treasure and I squared off against our fiances. We kicked their asses, royally. We ended the night with a luxurious soak in my dipping pool beneath a moon-lit, starry sky. I vividly recall how perfectly room temperature the water was, floating in complete bliss in wonderful company; an ethereal experience for sure.
The next morning, everyone was doing pretty well, except for Joe. He was feeling particularly unwell. Treasure asked if we had any headache meds, but we didn't. So I escorted her to the local farmacia on the other side of the village. The sun shined brightly, the air comfortably warm and tropical. We quite leisurely made our way there and back.
Upon our return, I enjoyed a few sips of coffee. Treasure and Terry were chatting away at the high table on the back patio by the pool. I walked out to join them. As I stepped across the threshold, my gaze suddenly affixed toward the sky, which had been clear blue and bright with full sun. Suddenly the sky darkened until I could see nothing but black and stars. I felt for a moment as though my legs and feet were giving out on me. Then it was as if I was losing complete consciousness, as in my soul departing my body. Then the light appeared again as I gasped for breath and took a seat.
Treasure and Terry asked if I was OK, and completely frightened, I explained what I had just experienced. At the same time, I was trying to get a handle on how I was feeling. Something was wrong, very wrong. I could no longer gauge whether I was hot or cold. I knew the temperature was getting warmer outside based on the time of day. I thought maybe I was dehydrated from our night out on the town and needed to cool down. So I took a dip in the pool. The water temperature had virtually no effect on me, and then I worried whether I was cooling off too quickly. The most alarming of all at the time was having no sense of internal body temperature.
I got back out of the pool, dried off, refilled my water glass and laid down in my cool bedroom. And that's where I remained, slowly and regularly sipping water until lunchtime. By afternoon Joe was up and stirring. We all walked down to La Playa to eat lunch. I just ordered a quesadilla, which I ended up only taking a couple bites of. I had no appetite and still felt rather "off." So I excused myself from the table. On my way out I ran into my ex's mom Pat, who I adore. I told her I wasn't feeling well. She smiled back at me and said something to the effect of how it sucks getting old. Mind you, I was 38 at the time.
When I got home I climbed back on the bed and rested until dinner. We had a special evening planned, our first time going to our local polo club, which is quite lovely. I would even venture to describe it as luxurious. They had a guest chef from Oaxaca that night. We had a delicious dinner and a marvelous evening. I decided it was best to lay off the booze, so I tea totaled all evening.
The next day we were heading home. This is when the more minor and periodic faintness spells started. I would suddenly out of nowhere get woosey and feel as though I were starting to lose consciousness. A wave of panic washed over me. Then it would all dissipate and I would return to normal. Frightening and completely puzzling.
One of the first things I did when we got back home was book an appointment with my primary care physician at the time, Dr. Michael Rosenfield, at Emerald City Medical Arts. I hadn't seen him in a while, and I wasn't a long time, established patient of his. So I was pawned off onto his cute physician's assistant and his more robust nurse. Mind you I was still having these peculiar faintness spells for several days between leaving Mexico and the day of my appointment.
The assistant checked my vitals and then suggested a series of blood labs. So off to the nurse for draws. The nurse first offered me a flu shot. I asked if she got them. She said no. So I declined.
When the results were in, the assistant said all my vitals check out just fine, so if things worsen I should go to the ER. Really?! Fuck you very much. And so began the next three years of health frustrations and scares, including a trip to the ER a few weeks later.
One early December 2012 morning I was at the office. I had been somewhat light headed since starting the day with a ringing in my ears. I was diligently drinking water. Even so, the faintness spells were coming on quite frequently. My colleagues were all in our weekly team meeting down the hall. As the spells began to intensify, I made a dash to my car and drove myself from my Wallingford office to the ER in neighboring Ballard. In hindsight this was not the best idea I had ever had, and really would have been better served enlisting someone from the office to take me. At the same time, the last thing I would ever want to do when I'm having such acute symptoms is cause alarm, worry or burden others.
Let me tell you, nothing is more frustrating than feeling as though you're just going to whither away from this world while someone is trying to collect your identifying information such that they may be entitled to collect payment from you and/or your insurer. Seriously.
The ER doctor, Brown as I recall, gave me the whopper of all health practitioner greetings I have received to date. After introducing himself, he asked me the following: "Has anyone in your family ever mysteriously and suddenly died?"
What the fuck kind of question is that?! Isn't an ER a place where they address trauma and not create it?! At the time not only was I not in any position to fully process a response to this question, I began to further wonder about what my body was trying to tell me. Was this its way of telling me its throwing in the towel, lights out, time to go to eternal sleep?
"No," I answered, "not to the best of my knowledge." Simply stated, that was the truth. Even so, in that moment a door had been thrust open in my psyche.
Dr. Brown ran a battery of tests; EKG, urine, stool, blood. The attending nurse put me on a saline IV to treat me for dehydration. At the end of the three ring circus, Dr. Brown told me they could make no determination as to my ailment(s), and referred me to a cardiac specialist.
The cardiac specialist ordered me to wear a holter monitor for three days to further investigate these faintness episodes. I felt a little like Darth Vader with this thing strapped to me 24/3, and was relieved to be able to turn it in.
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| I call this photo Darth Selfie. Yes, I do own a Darth Vader mask and large sombrero. This photo was taken around Cinco de Mayo, 2014 and only now posted for a little comic relief. |
My follow up with the cardiologist included imaging of my heart. The findings from the monitor, EKG and ultra sound ... Despite having tachycardia, which I was diagnosed with as a teen, my heart is healthy and not causing any trouble. Well, I guess that's a big relief. After battery of ER labs and this latest information, I was left with a $7,500 bill and nothing conclusive to treat.
For the first time in my life I felt truly powerless and helpless. I didn't know what to do or who to turn to for help. Add to my health issues being surrounded by all the doomsday chatter for 12/21/12. If I didn't have anxiety before, I was certainly going to now.
By the end of December 2012 I had an initial visit with Dr. Sean Congdon at the Bastyr Center for Natural Health, who my wonderful acupuncturist referred me to. My first visit was nearly three hours in length. Talk about comprehensive. We covered a lot of ground, including what I see in my dreams. Dr. Congdon shared with me that when our bodies are in imbalance, it can take a month to recover for every year we are imbalanced. If that's the case, then my body has been inbalanced for 36 of my 41 years on Earth, and I'm still to this day feeling unwell.
Even if we weren't getting to the bottom of things immediately, I now finally felt as if I had someone on my side, an advocate who was going to support me through this as best they could. And he did, for quite a number of years.
By the holiday season of 2012 I was still feeling intermittently unwell, often with head fog, ear ringing and the occasional faintness spell. My husband and I were spending the Christmas holiday with my mom at her home in Coeur D'Alene, ID. It's a magical town on a lake surrounded by mountains. We had a beautiful white Christmas, and I would have loved being able to enjoy myself more than I did. Toward the end of our time there I did start feeling better. For the next month following I felt as though I was making a solid recovery.
Then came early February 2013. I was out to lunch one afternoon with my title rep. Jenny. We went to a more foodie joint in Fremont called Revel, Korean/Northwest fusion. About half way through our meal I began to feel a strange sensation in my throat I hadn't before experienced. It was like something was caught in my throat. I excused myself to the restroom. On my way there a chill washed over me and I became a bit lightheaded. The throat sensation wasn't clearing, it seemed to be intensifying. I asked the waitress if there was anything in our dishes that may cause an allergic reaction. She was calm and very helpful and of course asked me if I had allergies to anything specific. The big problem was I had never before in my life had any type of allergic reaction to food, not even a sensitivity. My palette was quite broad. One of my former favorite foods was Unagi (eel).
To be safe Jenny rushed me to ZoomCare, and stayed with me the whole time. The doctor there administered a Benedryl shot in my right rear cheek and then sent me home. The doctor told me I could have a flair up within 12-48 hours and cautioned about the risks of possible anaphylactic shock. I suppose for liability purposes they are required to tell patients such things. Still, these topics don't resonate well with one's psyche. Such concepts weren't only completely foreign to me, they were downright terrifying! I had no idea what was happening inside my body. Heck, I thought I was getting better. Now I might suddenly have fatal allergies?!
ND Dr. Congdon discovered my thyroid imbalance, completely overlooked by my previous primary care MD Dr. Rosenfield. Dr. Congdon gave me incredible dietary recommendations and supplements to support my body's natural functions. After six or so months of clean eating I had shed 45 lbs. or so of unwanted body fat. This substantial weight loss was yet another strange experience for me. For one thing it left me looking much leaner and more youthful. I often fielded compliments from people around the office, in my personal life. "Have you lost weight? You look great!"
Had the weight loss been intentional, I may have been delighted by this attention. Yet I felt like shit. Many days a challenge to get out of bed and do my life. If I look so damn great, how come I feel so fucking crappy? In hindsight, now that I've lived with this invisible specter of illness for three years, the type of attention I find helpful is that of compassion.
Then came the breath shortness, which was periodic and at times severe. Dr. Congdon referred me to a top MD allergist, Dr. Virant, who prescribed me a rescue inhaler and epi pens for the throat responses. While I suppose these are good tools to have around just in case, being prescribed meds to help prevent the sudden onset of death is more than a little unnerving if you really think about it. Again, the antithesis of aiding my psyche in healing.
When the allergist's nurse explained the rescue inhaler to me, she mentioned it could make me feel a little jittery. If that wasn't the biggest understatement of the year. The one time I had a concerning breath shortness spell where I used the inhaler, the drug exponentially amped my anxiety. I felt like the world was fucking ending! I still carry my inhaler. Even when my bouts of breath shortness are pronounced, I use a breathing technique to ease my suffering and calm my system. Other times I just lay in bed as it's easier for me to breathe when I'm laying down.
There were also times where I got out of bed only to have my body feel like a wet noodle I could barely move. In hindsight it was a sudden and complete loss of energy. At the time I had no idea what was going on and felt like perhaps my number was up or going to be soon. One Saturday I recall in particular just laying in bed with a candle going, listening to Tibetan Monks on Pandora. While the music made this experience tolerable, this is no way to live. Just existing does not in any way shape or form resemble life. For a time I felt so poorly for such a duration I contemplated alternatives to life. If this is how it was going to be from here on out, what really was the point?
I found my way to the best MD endocrinologist in the state, Dr. Murray, who put me on an RX of T3 and T4 supplements, my energy levels stabilized. Only now I'm diagnosed with Hashimoto's Thyroiditis. On occasion I do have more energy than other times. Still, things were looking up.
Dr. Congdon had me take many tests, mostly blood and a couple digestive labs. Those were my least favorite, having to defecate into what looked like a paper to-go container for French fries, then scoop part of it into vials, package and mail it off in a biohazard bag. Most unpleasant; gross.
My digestive labs came back showing candida overgrowth and some parasites; two known and one unknown. We treated the candida. Dr. Congdon's opinion about the parasites is they are generally common in people and a path to chart if things get worse.
Before my body became imbalanced, I lived a very vibrant life. I had lots of friends who I spent time with on a regular basis. Today my daily life of friends has dwindled down to my most important people; my husband, our dog and my bestie. Keeping up on the bare minimum to make my life work is where I allocate about 90 percent of my energy, most of that is directed toward my occupation. Whereas I used to thrive on and found the company of others restorative. Now I find solitude restorative. Not having to talk or be clever or interesting or interested. Quite frankly I'm just no longer up to the task of being me. Quiet time where I can just be is what helps me recharge.
Having gone from being someone who was once gregarious, full of life and vitality to suddenly being in survival mode is quite a dramatic transformation. While in some ways I've been sad to see friendships fade, I know it's all for the best. I don't know for certain I'll get better or recover my health; I'm optimistic I will. When that day comes, I will have space for genuine friendships, people who will stick by me through thick and thin. I'm grateful for those people I have in my life who have been there for me through this whole journey, which has been an evolutionary and revealing experience, brushing aside the noise in my life.
Ironically I've had two of my most successful years in business these past three. One thing I attribute to this is focus. I don't have either the time or energy to mess around. So I have to quickly make sense of things and only perform work that's meaningful.
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| So here I am three years later in bed at my Normandy Park home, still sick and being cared for by Nurse Millie Monday, November 9, 2015. |
As wonderful as Dr. Congdon has been from late December 2012 through spring of 2015, I feel I may need more aggressive support. His opinion has been that whatever infectious agent I may have, my body is dealing with it very well. As such, he is of the mind to not intervene unless things get worse.
Dealing with it well is all relative. This illness, whatever IT is, has been quite debilitating for me. Though I've read about cases of people having Lyme whereas they have such severe migraines they are admitted to the ER for morphine drips, and even that isn't completely effective. I've more recently had some head congestion, sometimes on the intense end of the scale, nowhere near hospitalization. Even more recently inner ear aches and on a couple occasions a severe loss of hearing.
For the past three late summer seasons, I go from feeling alright to feeling really unwell. This year was no exception and more intense than the past two warm to cool season changes. Today I was really out/short of breath. My husband is at his wit's end with my illness. That's a whole other story about his psychological issues with illness based upon his once abusive mom's hypochondria.
Two nights ago we got into a fight. He yelled at me because he thinks we need to aggressively treat my disease. Yet he has done little if any study of Lyme and I believe is mostly just frustrated that we've not been targeting this since my test results about a year ago. My husband also has several health issues of his own. So I yelled back about his reluctance to do anything about his own health and that maybe he ought to be doing something extreme to correct his issues.
As much as I understand my husband's frustrations, and he has every right to feel the way he feels, no one could feel more frustration about what I've endured than me. Yet I am taking it in stride; moment by moment. In the past year or so I've taken up a meditation practice, which I've found most helpful. I've studied Buddhism, which is really more a philosophy of life than it is a religion, and it's quite practical. I've done a shamanistic soul retrieval. I've been poked, prodded, adjusted, massaged. I took an eight week mindfulness based stress reduction workshop. I've completed a biofeedback program. I've rested, hydrated, eaten clean. I've supplemented, RXed and detoxed. I've been doing everything I can to support my own well being for the past three years. Despite my countless hours, high degree of discipline and thousands of dollars spent, I am still unwell. So if anyone is allowed to be frustrated, it's me. While I am, I still have hope and optimism I will heal, restore balance/homeostasis.
My husband has also been very patient, and at times in copious amounts. As much as I appreciate his patience, the one thing I need most of all from him more than anyone else is empathy. Based on his childhood-based wiring around illness, it's one of the most difficult things he can give to me.
Today I posed to my husband perhaps he would be happier with a healthy partner. I was serious. Yes, more often that not this imbalance has been a very lonely journey. Still, I would rather be in solitude than be the source of someone's constant frustration. That doesn't help either of us, I do love him and want him ultimately to be happy, even if it's with someone else. The practical me becomes quite strong when my body is weak, come to find out.
As of December 1, 2015 I have an initial consultation scheduled with a naturopath who specializes in Lyme Disease and co-infections. This doctor previously practiced in Connecticut, which is an area well known for Lyme. This doctor also has battled and healed from Lyme. I am even that much more encouraged. Perhaps this is the final phase of this three year journey. I truly wish for this saga to come to a positive resolution as soon as possible. Time will tell ...
I could have greatly elaborated on this post, and there's so much I have yet to share. For another time certainly. In the meantime, I leave you with this:
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